Turns out I'm Veruca Salt

I don't exactly want a goose that lays golden eggs or a bean feast or to cheat my way into Willy Wonka's factory - but I am a Veruca. I want a lot of things now and I always want more. 

Part of what I keep thinking about is my age... I feel incredibly young to be dealing with this diagnosis. I know I'm not when you consider pediatric cancer and the reality that I've lost several friends when they were only in their 20s. I've had twice as much as life, twice as many experiences. But it's not enough! I'm not done. I want more!!! I want to lock it all up in my pocket, it's my bar of chocolate!

I've been reading several books by Kate Bowler - a woman whose life was also disrupted by cancer at the age of 35. (And here I am complaining about being young at 42!). I find her so comforting because she's HONEST. Her book "Everything Happens" is what I needed to read as I was grappling with the why of cancer. Why me, why now, why the f$#k honestly. She is a religious scholar and has spent much of her career dissecting the idea of the prosperity gospel. A lot of churches preach these ideals - that if you obey God, you'll have wealth, health and happiness. That you can "earn" it all... just keep titheing, praying and behaving the way your pastor tells you to. I've had people tell me that my treatments won't be as effective if I don't give the glory to Jesus first. (Eyeroll.) 

The title of the book is a rebuttal to the platitude "everything happens FOR A REASON." I don't think it does. I think we can take power in our reaction to anything that happens to us, but I don't believe for a second that there's a reason for every shit thing that happens to us. I don't want to downplay an idea that brings comfort to so many people - that God has a specific plan for us. If that works for you, wonderful. We are all navigating this confusing, overwhelming experience. But sometimes things just happen. For me, it has saved me a lot of heartache and wonder to just accept that cancer has happened to me and there's no rhyme or reason. 

But anyways, Kate Bowler also had a very young child at the time of her diagnosis. And her fears spoke to me - the thought that she wouldn't see him grow up. I'm doing the math in my head all of the time - if my treatments work, and I live another 20 years... at least my kids won't be traumatized by losing a parent when they are young. If I only live another 5 years - that's a very different scenario. All the time I now potentially have ahead of me seems borrowed. In her book, Kate talked about sitting in her son's room and swapping out his clothes from one size to the next. Probably the most quintessential MOM thing to do. And when you are questioning your mortality - there's nothing I want more than to be sorting Finian's 4T clothes and buying his winter wardrobe in the next size up. I want to be there for all of it. 

I selfishly want more. I want to see my kids grow up, into middle age. I want to be there with my husband - to live longer than I have already experienced! I keep envisioning myself as a little old lady - who sends birthday cards with cash and works in the garden and knits baby blankets. I want to travel. I want to keep teaching kids how to sew. I want to go to dance class and watch my kids at school concerts. I want every graduation; I want every milestone. I want camping trips and afternoons at the beach. It will honestly never be enough. I'll never be satisfied. Who could be? At what point do we say - well, I've had enough time with the people I love? 

I do know that the time we're given is an amazing gift. I'm realizing that my connections to others IS the purpose. Or at least my purpose. So maybe I'm not a complete Veruca. 

Chemo #7 - The One Where I'm Still Bald & Summer Has Begun

The most recent chemo infusion on Monday was relatively uneventful. This was chemo #7 - only one more to go! Each week I'm terrified that it's somehow going to be delayed, interrupted or cancelled and I'll have to change my END DATE on the calendar. I want nothing more than to check this off on July 3rd and never see the 4th floor of Roswell Cancer Center ever again. 

My sister in law drove from Boston to help watch the kids on Monday, and to help prepare meals and generally let me sit on the couch. Or outside by the pool where I subsequently got a headscarf tan line! That's a first and probably not the last for the summer. I don't know if you can tell in the picture - but there's a clear line of tan vs not tan bald head. I also have a fine downy baby goose-like fuzz from the hair that never fully fell out. As I like to joke with the kids, "I'm still bald!". Some people say their hair starts to grow back during the last weeks of Taxol chemotherapy, but we will see. For now, I'm navigating the high temperatures, sun and sunscreen. 

The month of June is a lot for us. It's an emotional roller coaster of end of school year activities. I tear up with nearly every announcement of field days, graduation activities (even though I don't have a kid in the fight this year), choral concerts, final exams, SATs and prom. We did all of this and more in the first weeks of June. For the most part, the kids did an excellent job getting themselves where they needed to be and putting their best efforts into getting good grades. And Miss Delphine finished Kindergarten, which is wild to me. 

A lot of people ask how the kids are managing with my cancer diagnosis - and my answer is still unsure. I mean, we have teenagers in the house... so the level of "caring" is hard to gauge. Do they ask me how I'm feeling sometimes? Yep. Did they tell their friends or teachers about what's going on at home? Maybe not until they absolutely had to. Or maybe everyone was just too busy moving forward to fall apart. (I might be a model for that kind of behavior.) We never openly panicked about my diagnosis and while sometimes I wish the kids would step up with their help around the house, I can't blame them for taking it all in stride. We aren't acting helpless or melodramatic about my treatment, so why should they? One step at a time, and maybe freak out in tiny increments over the unknowns.

Next steps: We've planned a little travel in between the end of chemo (still fingers crossed that the last treatment goes as planned). We are traveling to my other sister in laws' civil ceremony in California since the trip to France to see the full-fledged wedding ceremony was not in the cards for us this year. After that, on July 22nd and 24th, I will have my next set of scans - a breast MRI and another mammogram - to determine how successful chemotherapy has been. The good news is that I already cannot feel the tumors that sent me to the doctor in the first place, so I know they've shrunk. Then I will meet with my surgeon to talk about the next steps. I feel like I've put in the "hard work" with chemo and can hope that surgery will be minimal and my recovery time quick. 

I'm very much looking forward to ringing the bell to signify the end of chemo and getting off this feel good/feel crappy/feel tired rollercoaster. 

Books to Soothe the Soul

I hope it's a well known fact that I love to read. I have spent the last couple of years trying to increase my yearly total (and yes, sometimes I include young adult fiction to boost my numbers!) Reading is a great escape, informant and way to "waste" time when bound to the couch. The chemo fatigue is catching up with me and usually for the week after an infusion, just standing is enough to tire me out. So reading soothes my anxiety and helps to get through the hours that I would otherwise be thinking about all that I wish my body would let me do. 

This first book was included in my free tote from the WNY Breast Cancer Network - I can't express enough how reading through medical terminology has calmed my nerves. Even before bedtime! One of my methods of dealing with a cancer diagnosis has been to take the personal aspect out of it. I certainly cried a lot at first, wondering why this was happening to me. But once I stepped back and viewed my treatment as something that was happening to my body, and not ME (my soul, my identity), it has helped immensely. I can read about my symptoms or treatments or surgical options without feeling like I am being attacked. I have an illness, one that could be far worse, and there is a ton of research about it. And oddly enough, Google has been soothing to me as well. I worry about the current step (what will this chemotherapy drug do to me? Neuropathy? Allergic reaction?). I also worry about my future with hormone therapy, menopause and the multitude of side effects that I could be dealing with for the next decade. But I actually sleep better when I read about these things and the medical rationale for whatever drug is prescribed next. Taxol clings to cancer cells in a different way than the previous chemo drugs - it is prescribed for longevity and prolonged survivability. The estrogen blockers that I will need to take will change my body's chemistry in a way, making it less hospitable to cancer. These are the things I need to read to sleep at night!

 

This next book was picked up at the library sale. If there's anything I'm not, it's reclusive. I thrive on interaction and pride myself on relationships. But I found this story of a man who lived alone in the woods for 27 years to be amazing. I get it, in a way. The open pockets of time, the connection with nature, the pure nothingness of his existence. His only downfall was that he needed to steal from nearby cabins to survive - he was not prepared to hunt or sustain himself. It was an interesting lesson on hermits throughout history and why they are so intriguing to the rest of us. 

And this last book is one that needs not much of an introduction. I enjoyed Michelle's first book slightly more, but I love her way of explaining her life and what's important to her. Mainly, relationships. It's a "how to" on making connections and putting yourself out there as an adult. We're all so afraid of embarassing ourselves or being the first one to ask a new friend to coffee... fearful of rejection. Imagine being middle aged with small children, leaving your career and still realizing you need Mom friends while moving into the White House (and fearing that any new person could quickly turn to the tabloids to spill your secrets). The fear could be paralyzing. 

It reaffirms what I believe is our own responsibility to nurture friendships - I don't understand how some adults think they happen otherwise? Be the one to reach out in a text or remember someone's birthday. My current stressful situation has only been sustained by my relationships. People actively showing they care, and I hope I can reciprocate in the same way. 

And as for any books I've read, they are always up for grabs and I'm happy to mail one in your direction. Except for my Breast Bible - I need those statistics and surgical options to sleep at night. 

If you're bored, You're not sick enough to stay home from school

 I don't know at what point in my childhood that my Dad said to me, 

"If you're bored, you're not sick enough to stay home from school" 

But it makes sense. If you're looking at the clock or TV isn't doing it for you, or even if you're awake - you are probably on the mend from what ails you. 

After about 48 hours in the hospital, I'm finally back at that point. I'm also typing with a blood oxygen monitor taped to one of my fingers - so I'm a little bored and also a little annoyed. 

I will backtrack a bit to the last chemo infusion on Monday, May 22nd. It was the first of a new drug, Taxol, that runs about a twenty percent chance of an immediate allergic reaction. I was terrified of breaking out in hives or having difficulty breathing - but none of those things happened. I did get the chemo successfully and went home to weather the side effects. Two days later came the start of a UTI and Wednesdays are the day Gregory gives me the Neulasta shot. 

Now to clear up any confusion - the Neulasta shot is actually a pretty amazing thing. It is given two days after chemo to help your body boost white blood cell production. It's not a cause of infection. Its purpose is to help your body rebound and hopefully protect itself a little bit better while the chemo wears you down. It also comes with side effects. I hadnt experienced any of them until this week - but it can cause severe cramping, body aches and bone pain. 

And oh! I found out what they mean by bone pain! It was mostly in my lower legs, but I felt radiating pain in my lower legs and walking was actually uncomfortable. This isn't entirely surprising as my body must be working harder and harder to "fix" itself. I was experiencing this, a UTI and new symptoms of a radiating, sharp  headache as well. Tylenol, ibuprofen were in steady rotation (as I was later scolded by the doctor - but what's a person to do??)

So I was experiencing a myriad of unpleasantness, but it's not like I've been through chemo before and I don't know what's a standard side effect and then one (or several) to bring to your doctor's attention. But FEVER, That's one we knew was no questions asked, you are headed to the hospital. 

I woke up on Sunday wondering if I'd ever feel human again, was dealing with body chills when I thought to ask Gregory to take my temperature. 102.7 and I knew this shit was a problem. I shed a few tears of self pity, irritation and that general weepiness of several days of not feeling good. We are lucky that we are only 20 minutes from the cancer center (some people travel hours) and went to their assessment center. 

I am impressed by how seriously the doctors take each symptom, but also a little irritated by the redundancy. Yes I still have a headaches but you don't want to give me Tylenol because my liver enzymes are elevated and we don't want to unnaturally bring the fever down and and and.... Cultures came back pretty fast that the infection was the UTI but they need to draw blood from two different spots. Then I'm getting a chest x-ray and then a surprise blood thinner shot in my stomach to prevent clots. Enough! Being sick is irritating and the worst kind of attention. 

This is all a very long story to explain that I have an infection, I needed fluids and antibiotics and don't be like me and wait several days in misery before calling the nurse hotline. I still have some personal work to do to get over my self image as a "healthy" person, at least for the time being. While chemo can sometimes cause an intital fever, there's no way it would do so nearly a week after the infusion. 

The real superstars of the week, as usual, are Gregory for having to watch it all helplessly, My friend for having the kids over t

House Cleaning and Other Happy Happenings

I had an impression of what being in chemotherapy would be like - and I didn't expect the time to pass so quickly. Everything, it seems through the lens of social media (or from any sort of distance), moves faster than what we're comfortable with. Kids grow up and people whose weddings you attended are suddenly approaching 20 year anniversaries! 

So while I thought it would irritate me to hear anyone say, "Oh, you're already halfway there? It happened so fast" - it doesn't. You may not be sitting with me on my bad weekends, while I don't have much energy to get up - but the weeks in between treatments are *almost* normal. 

I thought I'd be laying in bed, counting the days on the calendar. Painfully. With boredom. But living with children, especially a 4 year old, doesn't really allow for brooding and Netflix. 

There have been a lot of really happy happenings here in the past couple of weeks. 

Now - for the first time in my adult life, I'd love to invite everyone over and you can look into every corner of my dining room AND the bathrooms AND the inside of the microwave. I had signed up for a charity called Cleaning for a Reason that matches anyone going through chemotherapy with a cleaning company. They graciously clean your house two times during treatment. We have never, ever hired professional cleaners before. What a novel idea! :) We were matched with Dust 2 Sparkle and having another adult come to the house and clean for 4 hours straight was both strange and delightful. Even if I had the time or energy to devote to cleaning - there is no way I could focus or be so proficient with my allotted time. (And the showers are STILL so clean!) It's been a weight off of my mind. 

Other happenings, unrelated to cleanliness:

We celebrated a certain someone's 43rd birthday in our household. My friend Sharon took me to an ambient sound healing event, where I had my first tarot cards read and then we got to relax for 45 minutes, trying to put our stressed brains into theta mode. My cousin organized a Zoom hat party - a feat in itself to coordinate my family from what I think was nine different states and two different countries. Everyone sent fun hats and accessories, I felt very encompassed with love. 

We have been showered with amazing food through the meal train. My school sent a box of amazing encouraging cards from the 1st and 2nd graders. It was a box filled with virtual hugs!

I know I am missing cards and gifts that were sent - but I almost feel like I need a secretary to help me keep up with the items and when to time my thank you notes. Because if you know me, the thank you notes WILL come your way. It IS the way. 

As for a medical update: I'm not going to declare that I'm halfway through treatment until the nasty side effects are gone from my last dose of The Red Devil & Cytoxin. I'll reach that benchmark some time next week. This past infusion continued to hit hard; I didn't feel fantastic going into it on Monday. I'd had a low grade fever on Sunday (which I did spiral into a bit of a panic over) and feared that I would either need to go to the hospital - they recommend it if you hit 100.4 - or my treatment would be delayed. I felt nauseous and tired during my chemo infusion and came home to sleep it off for abour 16 hours straight. A combination of rest, patience, lots of carbs to satisfy my steroid-induced hunger, hydration and distraction has become my method of getting through what can be sort of a miserable experience. But thank you science for medications and thank you God/Goddess/Universe for all of the good people in my life. 

Infusion #3 - The One Where I Was Really Tired

 A friend who unfortunately has already gone down this chemotherapy road described it as a roller coaster and SHE IS CORRECT. Fluctuating between good weeks and bad weeks, counting down the days. 

 I'm lucky (ha! lucky) enough to have infusions every other week, giving my body time to rebound. The problem with that is I get a little taste of good health before willingly putting myself back into the chemo chair to do it all over again. The effects are cumulative - so I believe I've passed the honeymoon phase of relative good energy and spirits. Everything hit harder this time. The fatigue. The nausea. The languid manner. The really gross sweet metallic aftertastes. I came home from treatment last Monday and was probably a bit of a mess. I left water running in the bathroom after washing my hands, threw my coat on the floor, probably threw a few other things and went straight to bed. Luckily with the meal train - I woke up to eat dinner and lasted about an hour before needing to go back to bed. 

 It could be worse, I know - but mentally, it's difficult for me to just "let it be" and wait it out. It's not normal for me to watch movies in the middle of the afternoon. I've let Finian spend many hours on Roblox this week. I have an unfinished sewing project, a quilt top that is practically taunting me... "Come on, just a few more rows and I could be finished!" 

 Gifts and cards have been rolling in at alarming speed and I am so grateful. I do tend to put myself on an island when life is less than ideal - and it means everything to me that while the world is moving at full speed, so many friends have taken the time to write a note or pick out some pretty epic pick-me-ups when I'm laying on the couch like a bum. 

 And to round out this update: let me share my movie reviews from the films I've watched at odd hours of the day. 

Whitney Houston : I Wanna Dance With Somebody - 7 out of 10. Mostly because it's hard to dislike reliving songs that you played on the jukebox at Pizza Hut in 1988. 

The Whale - oh my god, 2 out of 10. I know it's an adaptation of a play, so that must explain some of the melodrama but I couldn't get past it. Kudos for makeup, etc etc, but no thanks. 

I switched to Queer Eye after the long movies and as always, 10 out of 10. 

And in Delphine's World

Most of you know that Delphine had the most dramatic entrance to the world, out of all our children. Her bathtub debut is a story we love to re-tell to her, and she's grasping more and more of it as she gets older. "You mean babies come out of WHERE"? :)

She's been a great motivator and truth teller in the past couple of months - as all seems to be moving along wonderfully in her 6 year old world. First birthday parties with friends, attending a Q & U wedding in her kindergarten classroom, learning Tiktok dances and learning to read! 

We have a wide array of ages in our household, so the sweetness of this age is not lost on us. She's willing to tag along to stores or watch movies or comfort me and say "I wish you never had the cancer." Me too, girlfriend. 

Here are a few photos to share all of the excitement of being 6! Including the first lost tooth (which we think either went down the sink with toothpaste or was swallowed. We'll never know!) 

Reading to me while I relax on the couch

Enjoying the karaoke machine while in Tennessee

Because everyone takes a selfie (or a DELPHIE!) after a long day at Dollywood

What I tend to find on my phone every time it is left unattended

First lost tooth!!!

With curled hair, ready for a night at the movies.